Hey everyone, I know this is long, please bear with me
Haven't posted in a while - been a tough summer. We've definitely been struggling as a couple finding better ways to communicate through all this, but we're making headway. My husband is the type that doesn't worry too much and thinks things will get better on their own, so when it came to ed therapy I became the "nag". I'm the researcher in the family and would try to impart information bu finally gave up. I am so emotionally drained after losing my dad earlier this year, losing my relationship with my mom because of her bitterness towards my dad over a divorce 30 years ago, and then feeling like I'd lost that connection with Jeff. To top it off my new Marine left for Iraq 2 weeks ago.
So we've gone through lots of fights and tears but each time have opened up more, and my husband is doing much better sharing his fears and being proactive. The problem is we haven't felt comfortable with any of the dr.s we've seen in working through the ed. They are so flippant, and somewhat ill informed. I get so frustrated when I come on this forum and read the steps others are taking, or when I do research on my own.
A brief history and update is this: lap. radical prost. 10/17/06. Prior to that, NO ed. Jeff could reach full erection in a matter of seconds. No urinating problems. (He just turned 46). Both nerve bundles spared - the dr. indicated the surgery went very well in that respect. Off pads within 2 months. When we first asked the doc about using the pump he discouraged the idea (this was a young dr.) At 6 wks prescribed viagra. We tried viagra, cialis, and levitra with no measurable success and horrible side effects. Dr. prescribed muse, again horrible pain. So he finally ordered a pump,in March, per our request. Jeff used the pump faithfully, we had sex once with it, requiring like 3 bands - not too good. Plus Jeff started having horrible pain during subsequent orgasm, so I think he pulled something.
So we kind of eased back in to things slowly. He started feeling better and I nagged him in to injections. Our dr. had moved so we decided to try another at a different practice, since our dr.s office didn't seem too proactive . New dr. told us there was no difference between caverject, bimix or trimix, gave us caverject knowing the probs we had with muse, gave us a needle and sent us on our way to self inject the 1st time at home. The needle was not diabetic, so you can imagine my husband was not ready for sex - he couldn't even get the needle in until the 3rd try. I was so angry because I new what he told us about the medicine was incorrect.
Went back to original dr.s office, got a new guy who is like Roger Rabbit on speed. He told us we were going to work at getting Jeff a rock hard erection. That sounded good to me. We came back with a bimix solution for him to administer for the first injection. He was having Jeff hold it while he guided his hand and then WHAM he jammed it into his penis - I jumped and so did Jeff. It was horrible. He came back in to the room after 20 minutes and was all excited about the erection (which was about 1/3 normal). That was very depressing, using .5cc of the bimix. But he assured us with practice and in a relaxed atmosphere it would be better. Hmmm.
We went home and had miserable sex because Jeff was in so much pain - but this time more from being somewhat erect finally, not the ache from the medicine. Then because of lots of scheduling things, and because of Jeff's fear of the needle after these crummy experiences, we didn't try again until 2 weeks ago. In between time Jeff kept pumping and we have been finding more & more response on his own, with enough stimulaiton, so that's encouraging - nothing workable, but definite improvement. So 2 weeks ago Jeff tried, shot much more successful, and enough erection for penetration, but still probably about 1/2 - 2/3 size. But that's okay, we'll practice. Tried tonight, shooting on oposite side, and immediate horrible pain, some erection, couldn't even climax because of the pain - maybe he hit something he shouldn't have?
So we are both so discouraged (I know it's only been a year, and we are so thankful for his PSAs). But I told Jeff tonight I didn't feel comfortable with Dr. Roger Rabbit, and he said he felt like we were all alone. I feel like our drs really focused on the cancer, which is the most important thing, but are so unconcernec about the ed. It's like because he's young and healthy he'll bounce back, so what's the hurry? Even this last dr. told us lots of people wait longer to have the shots, whereas I've read many articles where some dr.s think the earlier the better, it promotes healing.
I just needed to vent, but I also need to know if anyone is seeing dr.s in our area who they feel are really on their side, working as a team just as diligantly on the ed as the cancer. I've heard Duke and I think UNC mentioned - they are very close to us. We are right on the edge of Raleigh..
Any help would be so appreciated. And by the way, my son is doing great in Iraq. He gets to call home at least twice a week, but we miss him so.
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%